The specialist wasn't a CFS specialist (there are very few of those in the entire world, let alone Tasmania), so once she'd ruled out several more infectious diseases, she downloaded a report from one of the most commonly used journals available to doctors, with the latest in CFS diagnosis and treatment.
Unfortunately, the top two 'treatments' recommended in this article were Cognitive Behavioural Therapy and Graded Exercise Therapy, which refer to a now debunked 2011 study. The publication of this study in major journal has caused much pain and suffering for patients, and its very unfortunate that this has not yet been updated in the literature available to doctors in Australia. Because I did not have the energy or mental clarity to argue this point in person, I have written this letter to have on hand to give to any doctors who recommend CBT or GET to me, with the aim of counteracting the misinformation.
If any of you out there reading this are also encountering doctors who are prescribing CFS or GET, feel free to modify and use this letter for your purposes, it's open source.
Concerns about CBT and GET recommendations in Up to date report: Clinical Features and diagnosis of chronic fatigue syndrome / systemic exertional intolerance disorder
I am writing this response because I am concerned that the top two treatments for CFS/SEID recommended in this report are Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET). The reference is to a controversial 2011 study, which has now been revealed to have used a deeply flawed scientific method (1,2, 3, 4). It is the opinion of many CFS patients and doctors that these recommendations are potentially harmful, and they are connected to the now outdated misconception that CFS is a psychological disorder.
I agree that CBT may be useful for some patients in learning to manage the disease. Psychological management skills can be very important when finding oneself suddenly living with a debilitating chronic illness, however it is in no way a curative treatment, as the report suggests.
GET, on the other hand, has been very harmful for many patients, causing major relapses in their condition. I agree that when in recovery from a serious illness or injury, a graded exercise program is important. However if a patient had a broken leg, for example, therapists would make sure that the damage to bone was healed before any walking was allowed. However, for many CFS/SEID patients who have been forced to undergo GET, the underlying disorder has not been resolved, and the exercise has exacerbated and prolonged their illness, just as walking on a broken leg would do.
One of the main, defining symptoms of CFS is post exertional malaise (PEM). Basically, this is an inability to repeat previous exertion. It has been demonstrated through exercise trials on consecutive days, and can clearly differentiate CFS patients from healthy controls, and sufferers of other diseases such as MS (5, 6, 7). PEM can last for days to weeks after the exertion, manifesting in worsening fatigue, flu-like symptoms, cognitive dysfunction, sleep disorders, pain and orthostatic intolerance, among others. The exertion needed to trigger PEM varies between patients, and at different times of the one patients' illness, and can be as little as showering, talking for ten minutes, or walking to the toilet. The onset of PEM can be delayed 24-72 hours, meaning it is not immediately obvious to the patient when they have exceeded their safe energy envelope. (Anecdotally, many patients are finding pacing with a heart rate monitor a good way to limit their activity to within safe levels (8))
Therefore, I believe that any psychological or exercise therapy must be undertaken by CFS/SEID literate practitioners, familiar with the unique challenges of this disease, and it must not be assumed that these treatments are curative. It would be good if references to the flawed 2011 trial were removed from the literature available to doctors in Australia.
I understand that research into the underlying disorder that causes CFS/SEID is continuing, and hopefully a real cure for this real physiological disease is on the horizon. In the meantime, it should also be noted that many CFS sufferers, desperate to gain back some health and functionality, may be interested in trying more experimental treatments The disease can be so debilitating, and recovery rates so low, that patients may deem unconventional treatments to be worth the risk, if the practitioner is willing.
In the mean time, I believe that several more appropriate resources for clinicians treating CFS are:
- “Chronic Fatigue Syndrome Myalgic Encephalomyelitis, Primer for Clinical Practitioners” by the International Association for CFS/ME
- Beyond ME/CFS: Redefining an Illness: Report Guide for Clinicians. By the Institute of Medicine of the National Academics.
- Dr Charles Lapp: An Overview of ME/CFS Diagnosis and Management: https://www.youtube.com/watch?v=RTzfWs6Fhl4
- How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890
- Bad science misled millions with chronic fatigue syndrome. https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
- Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment http://journals.sagepub.com/doi/full/10.1177/1359105317707216
- Do graded activity therapies cause harm in chronic fatigue syndrome?http://journals.sagepub.com/doi/full/10.1177/1359105317697323
- Post-exertional malaise. http://me-pedia.org/wiki/Post-exertional_malaise
- Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity. http://phoenixrising.me/archives/17902
- Postexertional malaise in women with chronic fatigue syndrome. https://www.ncbi.nlm.nih.gov/pubmed/20095909
- Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope. http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope